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“I don’t want to be Henrietta Lacks”: diverse patient perspectives on donating biospecimens for precision medicine research
Open accessAbstract
Purpose To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections. Methods We conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian, and non-Hispanic white on the collection of biospecimens and EHR data for research. Results Our study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data. Conclusion Considering that the potential misuse of EHR data is as great as, if not greater than, for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives, and misconceptions about sources of patient information to build trust in research relationships.
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“Although there is generally a high willingness among patients to donate data and biospecimens for precision medicine research, one study also suggests that patients expect a corresponding countervalue when pharmaceutical companies earn large sums of money from drug development that was made possible by patients' donations.”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [115]
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“Some participants would like to have separate consent for biospecimens and EHR data, as they see a risk for misuse of DNA in future research [115].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [115]
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“Some participants in the study argued that if biospecimens contributes to corporate profit, patients should be compensated [98, 115].”
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“Nevertheless, some people would like to be compensated for their donation if pharmaceutical companies gain a high profit with it [98, 115].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [115]
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Metadata
- Authors
- Lee, S. S.-J., Cho, M. K., Kraft, S. A., Varsava, N., Gillespie, K., Ormond, K. E., Wilfond, B. S., & Magnus, D.
- Affiliations
- Stanford Medicine (US)
- Seattle Children's Hospital (US)
- Palo Alto Medical Foundation (US)
- Corresponding author
- Lee, Sandra S.-J.
- ORCID
- Venue
- Genetics in Medicine
- Publisher
- Elsevier BV
- Published
- 2019-01
- Volume
- 21
- Issue
- 1
- Pages
- 107-113
- ISSN
- 1098-3600 (ISSN-L)
- PMC
- PMC6289900
- OpenAlex
- W2805736463
- Cited by
- 129
- References
- 29
- Citations by year
- 2026: 10 · 2025: 12 · 2024: 23 · 2023: 25 · 2022: 23 · 2021: 13 · 2020: 19 · 2019: 4
- FWCI
- 8.58
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Genetics in Medicine (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health
- Palo Alto Medical Foundation
- U.S. National Library of Medicine (R01LM012180)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Health Sciences › Nursing › Issues, ethics and legal aspects › Biomedical Ethics and Regulation
- Keywords
- biospecimen donation, electronic health records, research participation, patient perspectives, precision medicine, informed consent, research ethics, privacy concerns, human cloning, body and identity, research trust, racial and ethnic diversity
- MeSH terms
- Humans, Health Knowledge, Attitudes, Practice, Surveys and Questionnaires, Research Personnel, Biological Specimen Banks, Privacy, Information Dissemination, Biomedical Research, Precision Medicine, Electronic Health Records
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